The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)
On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.
We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for this award-- after all, this film was especially made to serve audiences like you.
Voting for the Audience Award opens today Monday, June 18th and ends on Friday, June, 29th, 2018 at 1 PM Pacific Standard Time. Cast your vote now!
If you found solace in watching Unrest, if you felt seen, if Unrest moved you or your friends, family, neighbors to greater understanding and empathy, please vote and encourage others to vote as well.
Winning this award would mean renewed interest in Unrest and therefore, further visibility for Myalgic Encephalomyelitis. Let's keep elevating ME every chance we get until the neglect and stigma are gone for good.
"Hot Areas in ME/CFS Research: 2018" presented by Anthony L. Komaroff, MD, Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School and Senior Physician at Brigham and Women's Hospital Anthony L. Komaroff, MD, provides the latest installment of "Hot Areas In ME/CFS Research: 2018".
With increased momentum in research over the past two years, this webinar is a timely update to his popular presentation from our 2016 series that addressed current understanding of the role of various systems – including the brain, energy metabolism, genes, and immune system – in the pathophysiology of ME/CFS.
The American ME and CFS Society, a 501 (c)(3) nonprofit, has launched a Crowdrise campaign to raise funds for emergency aid for patients in financial crisis. Many patients are disabled and unable to work. Assistance at the right time can go a long way. AMMES' mission is to help patients and their families in practical ways. This is one of them. Please donate what you can!
If AMMES manages to raise 3000 dollars through this campaign, we will be eligible for a Community grant of 25,000 dollars. All of this grant will go into our crisis fund.
This is the description that appears on Crowdrise:
"Between 836,000 and 2.5 million Americans suffer from ME/CFS. One quarter of these patients are severely ill, and are either bedbound or housebound. Severely ill patients are unable to work, and many are denied disability. The financial crisis generated by a loss of income coupled with rising costs of medical care can force patients to forego necessary care and medication. In some cases, patients may even lose their homes and end up living in cars. In order to assist patients in need, AMMES is setting up a crisis fund to provide one-time grants to patients for specific needs. The funds can be used to purchase a wheelchair, pay a medical bill, hire home care, secure adequate housing, and other basic needs. All applicants will be required to provide written medical confirmation of their diagnosis, proof of financial need, and document the specific purpose of the grant. Where possible, a phone interview will be conducted. (Some severely ill patients cannot speak.) Any patient within the United States and its territories is eligible."
Ophthalmic correlates of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) --------------------------------------------------------------- Nadia Sultana Ahmed - College of Life Sciences, Dept. of Neuroscience, Psychology and Behaviour, University of Leicester
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, debilitating disorder. With the exception of disabling fatigue, there are few definitive clinical features of the condition. As a consequence, patients often have difficulty gaining an appropriate diagnosis. As such, identifying distinct clinical features of ME/CFS is an important issue. One under researched area of ME/CFSassociated symptoms concerns problems related to vision. People with ME/CFS consistently report a range of symptoms related to the quality of their vision including pain in the eyes, hypersensitivity to light, difficulty focusing on images, slow eye movements, and difficulty tracking object movement. However, there has been little attempt to verify patients' self-reports using objective methods. The purpose of the experiments presented in this thesis was to determine the effects of ME/CFS on: (i) performance on a range of tests of visual sensitivity and (ii) the morphology of the retina. Compared to controls, the ME/CFS group exhibited reduced accommodation, larger pupil diameters, reduced colour discrimination and poorer contrast sensitivity towards lower spatial frequencies. Thinning in the photoreceptor layers of the retina (the Outer Segment & the Outer Nuclear layer) was also apparent. These findings support the claims of people with ME/CFS that they experience problems related to their vision and its function. They also represent a potential marker of ME/CFS that may aid in its diagnosis.
"Now suppose you have a broken leg, and I am so good at NLP trance induction that I can stop you feeling the pain.
If I do this, so you start walking on it and don't bother to get it set and in a cast, you are going to end up with a terribly deformed and constantly painful leg. Ethical?"
"If you use NLP techniques to get rid of a headache that is caused by a brain tumour, your 'help' may mean the patient doesn't bother to get it properly diagnosed, and could cost him his life."
"The judgement about the use of NLP for the treatment of ME/CFS hinges on whether we believe the psychiatric model…that the original viral illness is completely over, and exercise is avoided because of irrational fears…or the medical model which observes the continuing relapses following exertion and concludes that this is evidence of a continuing latent infection."
The presuppositions of the Lightning Process™ are the ones which underpin Cognitive Behaviour Therapy and Graded Exercise Therapy: that ME/CFS involves only thoughts and beliefs which, if changed, can result in recovery. The patients' belief that there is an underlying physical cause, and that exertion can do actual damage is considered to be false. Treatment, therefore, can be successful if (and only if) this belief can be eradicated.
The Lightning Process differs from CBT/GET in that adds the use of NLP techniques to change beliefs and encourage the patient to give up his protective energy-conserving behaviour, his physical aids, and enthusiastically engage in exercise.
This would make it very effective indeed if the patient's symptoms were caused only by unhelpful thought processes.
It makes it potentially harmful if the patient's problems are in fact caused by a pathogen which is stimulated by exertion, and which the immune system can only fight effectively if the patient rests so that all his physical energy is available for the immune system.
In relation to ME/CFS, what are the 'impossible things' one must believe (and what must one refuse to believe) in order to maintain the view that ME/CFS is, in Simon Wessely's words, "nothing more than the belief that one has (ME)"?
You have to believe that people with no previous history of a mental health problem or of undue complaining about their health, and no preceding traumatic event other than a mild flu can become completely incapacitated within days, and continue to be so, simply because of negative thought patterns about minor symptoms.
You have to believe that intelligent, highly educated, successful professional people, including professional athletes, can suddenly, for no apparent reason, become extreme hypochondriacs, whose reports about their illness are either false or exaggerated.
You have to believe that for such people, the 'secondary gains' of assuming the role of invalid are somehow greater than loss of their profession, their income, their home, and often their families.
You have to disbelieve what patients report about their experience, even though patient descriptions of this very complex disease are similar across historical periods and disparate geographical locations. Patient experience, although varied in some ways, consistently reports that exertion brings on worsening symptoms, and that continued exertion brings on more permanent and serious relapse.
You have to believe that encouraging or coercing patients into doing something which is known to make them worse is a 'safe and effective' way to cure their illness.
How sexism is hindering medical research Naomi Chainey
As recently as 1921, MS (multiple sclerosis) was erroneously considered more common in men. By the late 1940s, a more even gender split was presumed. By 1960 it was posited that women might actually be slightly more prone to the condition. With the invention of the MRI - a more objective diagnostic method - we now understand MS to be three to four times more common in women.
So, back when physicians were making their diagnoses based on symptoms rather than scans, why was MS being missed in women? The answer, perhaps predictably, is that when men and women presented to clinicians with similar symptoms, men were likely to be diagnosed with an organic illness, while women were more vulnerable to a misdiagnosis of hysteria.
Popular late 19th and early 20th century treatments for MS involved antibiotics, syphilis medication or blood coagulants, while hysteria was treated with vibrators (yes, vibrators), hypnosis, or, if you were very unlucky, an insane asylum, so regardless of diagnosis, no one was receiving effective medical care. The gendered assumptions would have had a social impact, however, and indicate that men were historically considered more reliable as witnesses to the functioning of their own bodies than women.
As well as being a cautionary tale on condescending, paternalistic medical approaches to women, misperceptions about the male to female ratio of MS have had implications for medical research. Sex disparity in an illness can provide a starting point for unravelling the mechanisms behind it, and scientists now believe that high levels of testosterone may be protecting men from the disease.
"This is why it's vital to study sex differences in research," says Melissa Brown, PhD, the lead researcher on a recent study from Northwestern Medicine demonstrating that testosterone causes a cascade of reactions in male mice. These eventually prevent the development of the immune cells which attack the myelin in people with MS.
It's a discovery which could never had been made had we continued in the belief that MS was more common in men, which begs two questions: How much earlier might this discovery had been made if women had been diagnosed correctly from the start, and what gendered assumptions are we still making that might be standing in the way of similar discoveries?
My own condition, ME/CFS (also called myalgic encephalomyelitis or chronic fatigue syndrome), is, like MS, up to four times more common in women and shares other characteristics such as immune, cognitive and gut dysfunction, intermittent paralysis, fatigue and chronic pain.
ME/CFS was labelled hysteria as recently as 1970 by two psychiatrists whose logic went: "there is little evidence of organic disease affecting the central nervous system and epidemic hysteria is a much more likely explanation. The data which support this hypothesis are the high attack rate in females compared with males."
The paper they published had a significant impact on the research that followed, with scientists focused on discovering biological causes finding that their funding had dried up and governments prioritising research into psychiatric interventions (research now being held up to unfavourable scrutiny by the scientific community).
As it was with MS, new technology is now unravelling the biological mysteries of ME/CFS. However, it was only last year that the CDC finally removed its recommendation that patients engage in psychiatric interventions. Those interventions remain the standard in Australia with claims for the Disability Support Pension and NDIS routinely rejected if applicants have not engaged in (often) expensive, debunked treatments.
People with ME/CFS are not the only ones impacted by the ongoing dismissal of women's perception of their own health.
In her paper for the Berkeley Journal of Gender Law and Justice "The Resurrection of Female Hysteria in Present-Day ERISA Disability Law" lawyer Cassie Springer-Sullivan states: "Although I represent women and men with many different disabilities, I have been surprised to find that many of the disabled women who come to my firm seeking legal representation suffer from illnesses that are typically labeled "women's illnesses," such as fibromyalgia and lupus … I believe that this is because disability insurers often presume (incorrectly, in my experience) that women suffering from these types of illnesses are magnifying their symptoms or just have a low pain tolerance."
In addition to saving money for insurance companies, the widespread downplaying of women's pain continues to result in delayed diagnosis and treatment. Upon presentation to an emergency room it still takes women 16 minutes longer than men to receive an analgesic for acute abdominal pain. A diagnosis of endometriosis, a painful condition impacting women's reproductive organs, still takes a whopping average of 7.5 years from the time symptoms first present, as complaints are consistently attributed to normal menstrual function.
While women with a variety of ills may find themselves subject to dismissive assumptions about our experience of pain, it's important to note that hysteria itself is not just a relic of a less enlightened historical medical practice. It's gone through a facelift and a name change, but people who present with unexplained neurological complaints may still be diagnosed with conversion or somatoform disorders, the assumption being that if current technology can't find the cause, symptoms must be psychological.
It's estimated that women are up to 10 times more likely to receive the diagnosis than men.
I wonder how this will be viewed next century.
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When I first got sick, my boss and I had similar symptoms; mine were worse. His doctor took him seriously, even putting him on a plane to another city for further testing; mine assumed that the initial normal test results meant I was faking because my husband wouldn't let me quit my job, and saw no need for further testing, even when I asked for a specific test.
Comparing notes several months into the process, we sat in stunned silence, just staring at each other -- society may have been starting to treat women as equals, but doctors were still stuck in the mindset that all women secretly want to be housewives.
Even in the current millennium, I still run into doctors who think women don't want to work and will lie to get out of having to do it. The idea of a careerwoman appears foreign to them. And they still won't do a test specifically requested.